St Jude India ChildCare Centres runs residential homes for families of children who need to undergo long-term cancer treatment.
Geetanjali Krishna reports on this unique organisation's amazing work.
A group of children joyfully sing nursery rhymes in a bright yellow room. Among them is three-and-a-half-year-old Saajan Pandey, naughty, active and difficult to pin down.
"Seven months ago when he was diagnosed with leukaemia, he was too weak to walk," says his father Abhishek Pandey, a rural school teacher from Bihar's Nalanda district.
Pandey and his wife brought Saajan to the All India Institute of Medical Sciences, Delhi, for treatment.
"The doctors at AIIMS said there was a good chance Saajan would recover," he says. But it meant having to stay in Delhi for at least eight months during the course of his treatment.
For the cash-strapped Pandeys, such a long stay in Delhi was out of the question.
They barely managed to raise the Rs 250,000 required for Saajan's treatment. Fortunately, the doctors at AIIMS referred them to St Jude India ChildCare Centres, a unique organisation which runs residential homes for families of children who need to undergo long-term cancer treatment.
In 2006, St Jude India ChildCare Centres Founders Shyama and Nihal Kaviratne went to the Tata Memorial Hospital in Mumbai and discovered young cancer patients registered with the hospital's OPD for long-term treatment. They were often camping on the dirty pavements outside.
"Childhood cancers generally have a high rate of cure," says Anil Nair, CEO, SJICC.
"Doctors believe that with good nutrition and strict hygiene, almost 90 per cent of childhood cancers are treatable."
To give children a fighting chance against the disease the Kaviratnes decided to set up a holistic residential centre near Tata Memorial Hospital.
From one centre in 2006, SJICC today has 37 centres that support 459 families at a time, all close to the country's premier hospitals such as AIIMS in Delhi, Christian Medical College in Vellore and Tata Memorial in Mumbai.
Every centre provides a 90 to 100 square-foot residential space for each patient and two family members, dry rations, transport to and from the hospital, counselling and educational and co-curricular activities for both parents and children.
Each family cooks and eats in the shared kitchen. The families have to abide by strict cleanliness and hygiene guidelines. "With everything else taken care of, all we have to do is focus on our child's recovery," says Pandey.
Research shows the efficacy of this model. In 2019, Tata Memorial researchers studied the impact of the long-term holistic care enabled at St Jude, on the recovery rates in childhood cancers.
The study has found that the environment plays a statistically significant role in outcomes of cancers like acute leukaemia which need intensive treatment.
It also found fewer relapses among children who received holistic care in SJICC. For parents too, the experience of staying at St Jude is therapeutic.
They bond over shared experiences, learn to optimise the care they give to their child and, most of all, feel less anxious about the future.
As Pandey puts it: "My family is loving and supportive, but can't understand what it's like to have a child with cancer. Here, I meet other parents like me and that's a relief."
SJICC plans to expand and reach out to at least 1,000 families by 2024. Their model is, however, resource- and capital-intensive.
Each centre costs between Rs 36 lakh and Rs 40 lakh per annum to run. Their annual budget of over Rs 15 crore is covered by institutional and CSR funds.
The independent agency, CRISIL, has awarded SJICC the highest rating for voluntary organisations, which indicates robust delivery capability and high financial proficiency.
But it's the smile on Saajan's face as he plays with other children that says it all.
"Having a child with cancer is the worst trauma a parent can undergo," says Pandey as he watches his son. "But St Jude has given him a fighting chance."
Photographs: Kind courtesy stjudechild.org